Children with genitourinary anomalies are at risk for developmental and adjustment challenges. Pediatric psychologists can address the needs of these children within the urology clinic through focusing on assessment, intervention, and prevention of psychosocial problems associated with their urologic diagnosis. Care is optimized if surgeons and mental health providers work together to care for this challenging group of patients.
Over the past 30 years, the importance of considering “the whole” patient has gradually become a major focus of medicine across the spectrum. Health is now viewed as an interactive process between physical, emotional, and behavioral well-being. In pediatrics, this has been exemplified by the increase in emphasis on family-centered care, the medical home , and the recognition that children are not just small adults—they have physical and emotional issues that are specific to their age and developmental level. In addition, working with children always requires working with the adults, the parents, who care for them.
In adult urology practices, it is not uncommon to collaborate with mental health providers who work with patients with prostate cancer, infertility, or sexual dysfunction associated with urological disease. Pediatric medical services, including oncology, nephrology, endocrinology, and rheumatology, have incorporated psychological care for the patient and family into standard practice for many years. Pediatric surgical practices have been slower to include mental health services as part of the continuum of care. In this article, the authors propose that pediatric urologists and mental health providers can work together to provide complementary services that benefit patient care.
Mental health providers as team members
“Pediatric Psychology” as first described in 1967 by Logan Wright involves “dealing primarily with children in a medical setting which is nonpsychiatric in nature.” The focus of the field is working with children whose primary concerns are medical or physical but who may also manifest emotional or behavioral concerns. Pediatric psychology recognizes the bidirectional relationships between medical issues and psychological factors, with the goal of maximizing physical and emotional health.
There are several ways in which psychological factors can affect a child’s medical condition generally
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The psychological factors influence the course of the medical condition (eg, an oppositional child refuses to comply with care while a well-adjusted child can focus on their ability to participate).
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The psychological factors interfere with the treatment of the medical condition (eg, a depressed child does not perform clean intermittent catheterization [CIC] as directed, while an adjusted child follows the protocol).
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The psychological factors cause additional health risks (eg, an anxious child is afraid to ask to be excused to use the bathroom at school, so increases her risk of urinary tract infections while a less wary child can ask for what she needs).
Similarly, medical conditions can affect the psychological well-being of children and their families. Mental health providers can address issues such as depression, suicidality, anxiety, behavior problems, and problematic family dynamics that emerge in the context of managing the medical condition. These issues may present during the medical appointment, but few medical providers have the time or training to address them in this context. The adjustment to complex genitourinary (GU) anomalies has condition-specific developmental implications as well. Thus, psychological factors can influence a child’s condition generally and can be influenced by that condition more specifically. A collaborative relationship with a mental health provider can facilitate treatment by helping parents and the child adjust to the medical protocols within their specific capacities to do so, so that the child’s medical care is optimal. Indeed, when mental health and medical providers collaborate, there is an increased opportunity to help identify barriers to implementation of recommended treatments and to develop interventions to ameliorate challenges.
These goals are most effectively reached when the mental health provider is embedded in the settings where patients get their care. Successful collaboration requires that (1) the psychologist have expertise in the application of clinical knowledge, (2) there be significant shared knowledge and expertise where collaboration is necessary, and (3) there be a commitment to ongoing exchanges of information. These requirements are best achieved when the psychologist is entrenched in the urological clinic and can learn about urological needs in particular while applying accepted psychological principles and interventions. For example, a psychologist is going to be less well equipped to help new parents cope with the diagnosis of exstrophy without an understanding of the complexity of the condition. Similarly, recommendations about a child’s readiness for bladder augmentation will be less effective if the reasons for augmentation, the challenges of CIC, and the possible surgical complications are not understood and taken into account.
Developmental perspective
An understanding of the cognitive and emotional development of the child with GU disorders is essential to the medical practitioner. Although patients with relatively minor GU disorders may have no psychological sequelae, those with complex or chronic conditions are at greater risk for emotional and developmental challenges. Deviation from the more typical child developmental trajectories should be monitored in these groups. However, such departures may not necessarily be easily recognized or understood. Mental health providers, therefore, become central to this recognition and understanding and to engaging the child and the family with prevention and intervention, from the child’s infancy through adulthood. For example, the authors have worked with families who did not want their toddler attending preschool programs for fear that their GU condition would be discovered. Although protecting the child’s privacy is important, this need has to be balanced against the child’s developmental tasks of gaining independence, learning to separate from the parents, and socializing with peers. A similar problem may develop in adolescence and young adulthood, as patients avoid dating and other social circumstances as a way of evading questions about their condition.
Whether the condition represents a new diagnosis or a congenital anomaly, the child’s understanding of the medical condition depends on the developmental level. For children with chronic medical conditions such as exstrophy, spina bifida, hypospadias, or posterior urethral valves, their understanding of the condition changes as their level of development changes.
Infants and Toddlers
A major goal of this period is learning to trust and develop a sense of security. Children at this age generally have very little understanding of their medical condition. They experience pain, restriction of motion, and separation from parents as challenges to developing trust and security.
Preschool Children
This time is marked by an increasing desire for independence and autonomy. Children at this age understand what it is to feel sick, but they may not understand the cause-and-effect nature of illness. The child may try to counter lack of control over their world by challenging limits set by parents (and doctors).
School-aged Children
Children at this age are developing a sense of mastery over their environment. They can describe reasons for illness, but because they often engage in “magical thinking,” especially in the early school years, these reasons may not be wholly logical. Throughout this period, children start to develop a sense of self and how they are similar to, or different from, their peers.
Adolescents
Teens begin to develop an individual identity that is separate from their family. Self-image becomes extremely important during the teenage years, which can be a problem when the teen’s appearance is altered by illness or medication. This can be especially problematic for children with urological disorders that affect the genitals. A particular challenge for this age is balancing their desire for independence with the irresponsibility that can accompany a sense of immortality. Many teens go through times of denial of their illness when they may neglect to take medications or follow catheterization schedules.
It is also important to consider the context provided by the presenting medical issue. For example, short-term anxiety problems are common with procedures and can often be addressed with simple, short-term pharmacologic anxiolytics. Long-term problems pose greater challenges. Children with GU disorders may experience cognitive and emotional development that is mismatched with their physical or behavioral development (eg, school-aged children who are still incontinent because of a neuropathic bladder). This mismatch, especially as children become more aware of it, has the potential to lead to feelings of stress, low self-esteem, and shame.
Developmental perspective
An understanding of the cognitive and emotional development of the child with GU disorders is essential to the medical practitioner. Although patients with relatively minor GU disorders may have no psychological sequelae, those with complex or chronic conditions are at greater risk for emotional and developmental challenges. Deviation from the more typical child developmental trajectories should be monitored in these groups. However, such departures may not necessarily be easily recognized or understood. Mental health providers, therefore, become central to this recognition and understanding and to engaging the child and the family with prevention and intervention, from the child’s infancy through adulthood. For example, the authors have worked with families who did not want their toddler attending preschool programs for fear that their GU condition would be discovered. Although protecting the child’s privacy is important, this need has to be balanced against the child’s developmental tasks of gaining independence, learning to separate from the parents, and socializing with peers. A similar problem may develop in adolescence and young adulthood, as patients avoid dating and other social circumstances as a way of evading questions about their condition.
Whether the condition represents a new diagnosis or a congenital anomaly, the child’s understanding of the medical condition depends on the developmental level. For children with chronic medical conditions such as exstrophy, spina bifida, hypospadias, or posterior urethral valves, their understanding of the condition changes as their level of development changes.
Infants and Toddlers
A major goal of this period is learning to trust and develop a sense of security. Children at this age generally have very little understanding of their medical condition. They experience pain, restriction of motion, and separation from parents as challenges to developing trust and security.
Preschool Children
This time is marked by an increasing desire for independence and autonomy. Children at this age understand what it is to feel sick, but they may not understand the cause-and-effect nature of illness. The child may try to counter lack of control over their world by challenging limits set by parents (and doctors).
School-aged Children
Children at this age are developing a sense of mastery over their environment. They can describe reasons for illness, but because they often engage in “magical thinking,” especially in the early school years, these reasons may not be wholly logical. Throughout this period, children start to develop a sense of self and how they are similar to, or different from, their peers.
Adolescents
Teens begin to develop an individual identity that is separate from their family. Self-image becomes extremely important during the teenage years, which can be a problem when the teen’s appearance is altered by illness or medication. This can be especially problematic for children with urological disorders that affect the genitals. A particular challenge for this age is balancing their desire for independence with the irresponsibility that can accompany a sense of immortality. Many teens go through times of denial of their illness when they may neglect to take medications or follow catheterization schedules.
It is also important to consider the context provided by the presenting medical issue. For example, short-term anxiety problems are common with procedures and can often be addressed with simple, short-term pharmacologic anxiolytics. Long-term problems pose greater challenges. Children with GU disorders may experience cognitive and emotional development that is mismatched with their physical or behavioral development (eg, school-aged children who are still incontinent because of a neuropathic bladder). This mismatch, especially as children become more aware of it, has the potential to lead to feelings of stress, low self-esteem, and shame.
Related posts:
Hypospadias: Etiology and Current Research
Cryptorchidism: Pathogenesis, Diagnosis, Treatment and Prognosis
Urologic Care of the Neurogenic Bladder in Children
Lower Urinary Tract Dysfunction in Childhood
Contemporary Surgical Management of Pediatric Urolithiasis
Treatment Strategy for the Adolescent Varicocele
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